The Neuro will be eschewing patents for its discoveries and doing all it can to make its research findings – and all the data associated with that research – widely available. While there have been other large-scale open science initiatives – usually involving several partners collaborating in a specific area – the Neuro is the first major research institute of its kind to make such a wide-ranging commitment to open science.

That commitment just received a huge boost, thanks to a $20-million gift from the Larry and Judy Tanenbaum family. Prime Minister Justin Trudeau (BA’94) was on hand at a press conference on Dec. 16 to announce the launch of the Neuro’s new Tanenbaum Open Science Institute. “This is a catalyst,” says Neuro director Guy Rouleau of the Tanenbaum gift. “This is really going to allow us to get things done.”

“We thank the Tanenbaum family for this generous investment, which allows us to further accelerate progress to meet the needs of patients,” said Principal Suzanne Fortier at the press conference. “The open science movement is gaining momentum, with global initiatives under way in the European Union, Japan and the United States. The Montreal Neurological Institute and Hospital will become the first academic institute worldwide to fully embrace open science. The new Tanenbaum Open Science Institute will set the global standard for this movement and position McGill, Montreal, Quebec and Canada at the forefront of scientific progress.ˮ

Rouleau will lead the Tanenbaum Open Science Institute. Revenues generated from $10 million of the Tanenbaum gift will be used to fund the new institute’s operational costs. The other $10 million will go toward spurring open science efforts at other Canadian institutions.

When the Neuro first announced its open science plans this spring, Rouleau explained that the initiative was largely driven by concerns about the pace of discovery in neuroscience. “We just aren’t progressing quickly enough,” he said at the time. “Part of the reason is that the brain is so incredibly complex. We need to find ways to do things differently.”

For Rouleau and his Neuro colleagues, this meant opening things up and giving other players access to the massive amounts of data that researchers at the Neuro have been compiling over the years.

“There are a number of published examples of this, where scientists from outside institutions have looked at open datasets and made meaningful discoveries – even repurposing drugs to help treat patients with what would seem to be unrelated diseases,” says Jason Karamchandani, an assistant professor of pathology and a neuropathologist at the Neuro.

As discussions took place within the Neuro about how to make its open science plans a reality, Rouleau and former McGill principal Heather Munroe-Blum shared the Neuro’s goals with Tanenbaum. “I was immediately hooked on the possibilities,” says Tanenbaum. “It was too good to pass up.”

Tanenbaum is a longtime senior executive with the Kilmer Group and a member of the Toronto Board of Trade’s Advisory Council. He is probably best-known as the chair of Maple Leaf Sports & Entertainment. MLSE is the parent company of the NHL’s Toronto Maple Leafs, Major League Soccer’s Toronto FC and the NBA’s Toronto Raptors (Tanenbaum played an instrumental role in bringing the NBA to Toronto).

“We’re hoping that this becomes a template for other institutions,” says Tanenbaum. “If you look at the Neuro and think about all the different kinds of data that sits within those four walls, whether we’re talking about bio samples or brain imaging, it’s an enormous pool of information. By sharing this, by putting this up on an open platform, hopefully others will follow suit and open their science up.”

If it sounds as if Tanenbaum has a good grasp of these issues, it’s because he does. He is the vice-chair of Brain Canada, a national non-profit organization dedicated to furthering our understanding of the brain and brain diseases. It has helped support the work of more than 700 researchers across the country. He was also one of the founders of the Ontario Brain Institute. And he has been a member of the Neuro’s advisory board for six years.

“There are a lot of dollars going into research on [heart disease] and cancer,” says Tanenbaum. “Historically, the brain has probably attracted about 10 cents for every dollar that has gone into cardiac or cancer research. Research is the key towards developing treatments or cures for these diseases.

“Some form of brain [disorder] strikes one in three Canadians,” adds Tanenbaum. “It touches the lives of millions of Canadians and it has touched my life. I lost my mother to Alzheimer’s and my father to a stroke. I lost three dear friends to brain cancer, and a brilliant friend and scientist to clinical depression.”

“The most exciting thing about open science to me is that it’s truly patient-centred science,” says Karamchandani.

“Patients, particularly those suffering from neurological disease, are in an unfortunate situation where we don’t have a lot of effective therapies. And patients don’t really care who helps them or who makes the discovery. They want treatments. So anything we do that delays the development of effective therapies is contrary to the interests of the patients that we’re here to help.”

Karamchandani will oversee one of the new institute’s most crucial projects, building the CBIG-Repository (Neuro Open Science Clinical Biologic Imaging and Genetic Repository), a massive assemblage of research-related materials. “We’re aiming to collect clinical, biological, imaging and genetic data on patients with neurological disease and the goal of this is to make it open to researchers nationally and internationally,” he says.

“Something like [the CBIG-Repository] doesn’t happen magically,” says Rouleau. “It requires space and resources and skilled people – and this is part of what the Tanenbaum gift will allow us to do.”

“This is an extremely ambitious project and one that’s unique in Canada,” says Karamchandani. “We are collecting [data] from patients with neurological disease and from healthy controls. We are deeply phenotyping these patients – meaning we are getting a sense of their clinical symptoms, their history, their treatment regimens, and we are monitoring them through time, so this isn’t a one-time snapshot. Where it’s relevant, we’re also collecting imaging and biological specimens.”

The CBIG-Repository is already partnering with the Quebec Parkinson Network. “That pilot project is the best example of what we hope to do,” says Karamchandani. “We already have more than 100 patients [with Parkinson’s disease] who have altruistically agreed to donate to CBIG. Fifty of those patients will receive high-level imaging and all of this will be anonymous, de-identified and placed on a secure server where researchers with an ethically valid and scientifically valid question can access the elements of the data that they require to answer their research questions.”

Tanenbaum hopes that the Neuro’s open science practices won’t be a one-way street. “One of the first challenges is to get other institutions that are dealing with neurological research and brain disease to open up their science, too. That’s why part of my gift is a challenge fund to encourage other institutions to do this.”

The Neuro expects its open science policies will spur new partnerships with other organizations and companies that are trying to develop treatments for brain diseases. Patents can get in the way of these sorts of collaborations.

In a recent piece published in the journal PLOS Biology, McGill law professor Richard Gold, BSc’84, wrote that the Neuro hopes its approach to open science “will draw companies to the Montreal region, where the Neuro is based, leading to the creation of a local knowledge hub.” Gold, an expert on intellectual property issues who has been serving as an open science adviser to the Neuro, added that the plan was already bearing fruit – Thermo Fisher Scientific, a multinational biotech firm interested in neurodegenerative diseases, will be partnering with the Neuro.

“I think the word is out there,” says Rouleau. “People are looking at us and looking to see how this works and how we’ll do it. Now we have to deliver. This gift from Mr. Tanenbaum and his family will help us to deliver.”

“Guy Rouleau’s leadership has been so important to this,” says Tanenbaum. “And a lot of credit has to go to the researchers and clinical scientists and all the people at the Neuro for taking this bold step – and it really is a bold step.

“I can’t tell you how excited I am by the possibilities here,” says Tanenbaum. “I think the Neuro will be a beacon of hope to those who are afflicted with brain disease because of this open science idea. I think the Neuro will be a beacon to the world.”

Click on the thumbnail to learn more about The Neuro’s commitment to open science.

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